Against the Dying of the Light
My mother, Gisella Orkin, did not go gentle into that good night. There weren’t many things she did do gently; caring for her babies was about it, although she could also melt in the presence of a stranger’s suffering. We once attended a party where she spent the better part of the evening talking to a stroke-afflicted guest whom everyone else politely ignored.
But more often, she was a force to be reckoned with as few people, even her closest friends, understood.
Her family, however, understood it all too well. The first decade of her marriage to my father, Harvey, was punctuated by explosions, accusations fired from both sides, (they were well-matched in this regard,) the scene invariably culminating in a door slam which left both her and me quaking and wondering if he’d ever come back.
But ten years into this Strindbergian danse macabre, we all moved to England and the turmoil abated. I reflected, from the filtered information available to a child, that perhaps my parents were absorbing some of that well-known British restraint.
That doesn’t seem to have been it. In 1983, my brother, Anthony, learned of the existence of our half-sister, daughter of the woman with whom our father had been carrying on an affair. It would appear that whatever needs our mother had not been meeting had found an outlet elsewhere.
One of those needs was for a drinking buddy. Unlike everyone else in my parents’ circle, my mother neither smoked nor drank. She wasn’t sanctimonious about it; she had initially fallen for my father because with his Scotch in one hand and cigarette in the other as he opined wittily on the subjects of the day (he was a writer on the Emmy Award-winning Sergeant Bilko series and went on to appear on British television with David Frost and the Beyond the Fringe crowd,) he fit her image of sophistication. She just didn’t cotton to alcohol herself.
She tried, once, in an effort to become the easy-going sort of woman with whom Dad got along.
For ten minutes, madcap fun reigned.
“Wanna do a belly-whopper?” she yelled from the bedroom as she hadn’t in years, since I’d grown too big.
“Yes!” I ran in excitedly as she, a former Broadway dancer who exercised every day of her life until, at eighty-one, she simultaneously grew too weak and forgot, lay on the bed and kicked up her legs to balance me on her feet.
But twenty minutes later, she bolted for the bathroom and threw up everything she’d eaten that day, spending the rest of the night curled up in fetal position in the tub.
My father never raised the subject again.
There was one notable exception to the reprieve provided by England to my parents’ Sturm und Drang: I walked in on the tail end of it when I came home from a friend’s house one mild afternoon. My mother was wracked with sobs as in the old days; my father took my arrival as his cue to exit for the pub (or so I assumed at the time.)
I asked my mother what was going on.
“Harvey told me that he was married before… when he was in the army. It lasted eight months.”
“Were there any children?” I asked, aghast at this bombshell going off in my placid view of the distant past.
“No,” said my mother reassuringly.
This scene took place, I had occasion to figure out in retrospect, about two months after my half-sister, whom I will call Barbara, was born, which was right around the time my father learned of her existence.
There are a couple of possibilities as to what my parents’ conversation had actually consisted of:
1. My father told my mother of his affair as well as of its result. My mother could not bring herself to tell me so she substituted a tale which, whether accurate or not, would satisfy my curiosity while also being, in her mind, not too far from the truth.
2. My father did not come clean that day. Instead, he told my mother of his earlier marriage in order to test the waters. The consequences were so dire that he realized he couldn’t reveal the real dilemma he was in.
Whatever happened that day, my mother never acknowledged the affair although everyone else in my parents’ circle knew about it. For one thing, the birth of the baby in question was all over the news as the Other Woman, who has since died, was reknowned at the time. “But who was the father?” the press naturally wanted to know. They never found out.
Barbara, who has asked for reciprocal secrecy in this account, has told me some of the reasons for her mother’s sealed lips beyond the obvious one of not wanting to be seen as a home-wrecker while our father might be portrayed, more, as a hapless oaf who was seduced: Not only was she having an affair with a married man, but he was a foreigner! And not just any foreigner, but an American!! And not just any American, but a Jew!!!
As for my mother, how was it possible for a woman as canny as she was about human foibles, (her most powerful weapon in argument was her ability to skewer the heart of her opponent’s weakness) to remain oblivious to my father’s philandering?
She must have known at some level, or else why find it necessary to account for his unusual chumminess with so many women? When my father lay dying of a brain tumor at the age of 57, my mother allowed a private visit from the actress Patricia Neal. Complimenting her on the trust this showed, Pat said, “Not many women would have done that.”
“Harvey’s not like other men,” my mother asserted confidently, and not for the first, or last, time. “He has many women friends.” (Neal maintained in her autobiography that her relationship to my father was platonic.)
When Barbara was twenty and I was still unaware of her existence, much less her relationship to us, she came to New York.
Anthony, who had learned about her while doing a junior year abroad in England, called and said, “I have something to tell you but you have to promise not to tell Mum.”
Not having any idea what the secret might be about, (Was he ill or in trouble?) I couldn’t promise.
Thus I didn’t learn about Barbara for another ten years.
But that summer, she made the trip, in part, to look up members of her family. When she called Anthony, my mother took the message, later musing to Anthony, “I wonder why she wanted to meet you.” Then she added, in the conspiratorial whisper of gossip, “You know, when she was born, it was quite a scandal.”
Anthony mumbled something about a mutual friend who’d thought he and Barbara would get along.
The point of this anecdote is that whatever my mother had once learned or suspected about Barbara’s origins, by the time of their phone interchange, she had made herself forget. Did the acting classes with Sanford Mizener (among her classmates were Grace Kelly, Leslie Nielsen and Robert Duvall,) enable her to feign ignorance so well, she ended up fooling herself? However she managed this feat, I have wondered if the effort contributed to her eventually contracting Alzheimer’s or whatever it was that claimed first her mind and then her life.
The saga of dementia (the initial test for Alzheimer’s so traumatized her, even possibly exacerbating her symptoms, that her doctor didn’t make her undergo another) is on its way to becoming a literary genre in its own right. For like Tolstoy’s unhappy families, each story is a nightmare in its own, unique way.
In my mother’s case, it’s impossible to say when the illness began. A loss of spatial sense is supposed to be a symptom but she never had such a sense to begin with.
Perhaps the first sign was heightened dissatisfaction.
This quality did not appear out of nowhere either. She had always had idiosyncratic peeves which she expressed with unusual conviction. For instance, she abhorred popular culture. Any actor less than Pacino was dismissed, though when a performance struck her as worthy, (an event which could take place in a tiny, ramshackle theater as easily as on Broadway – she responded to quality rather than brand names,) she shouted the loudest, and sometimes the only, “Bravo!”
But with advancing age, her tastes, like other people’s arteries, narrowed and hardened further. When she could no longer find a new writer worthy of sustained attention, she retreated to the two giants of her literary pantheon: Proust and Fitzgerald. Alas… They, too, had lost their luster.
So, also, went her former pleasure in food.
This was still another arena in which she’d always been particular. Rare was the restaurant that could meet her standards: The vegetables were overcooked or the sauce, heavy; the dessert too sweet; the coffee, stale.
On the flip side, she could wax rhapsodic over a fresh roll or perfect summer melon.
The sicker she got, however, as with Proust and Fitzgerald, the more her old enthusiasms lost their appeal, as though she had developed a virulent form of, “Familiarity breeds contempt.” She’d fallen out of love and like any romantic who wakes up one day to a hard reality, she turned her attention, instead, to accumulating grudges.
It was a skill at which she excelled. When a spoonful of mashed potatoes – long a savored appetizer – struck her as too salty, then in spite of all her mental losses, she diabolically retained a sense-memory of the event and refused ever to touch the dish again.
So followed a pageant of other former favorites: Nut butter of any flavor, (which I’d been counting on to provide some protein and calories,) turkey chili, Moroccan soup, guacamole, watermelon, plums, peaches, cheese, tzadziki. As for staples like tuna or potato salad, they’d never made it onto the list in the first place.
It didn’t matter how hungry she was; she would rather starve than eat something she didn’t like. Sometimes she gobbled the meatloaf sandwich I’d brought after which I’d find its cousin – lamb rather than meatloaf – uneaten, but for a gingerly bite, in the fridge.
One of the few up-sides to her new tastes was that she forgot she hated chocolate.
Also, for the first time ever, I could take her out for dinner.
Every Saturday, we went to a different neighborhood restaurant. If I’d dared suggest that three years earlier, she would have accused me of courting bankruptcy. But now I got to give her pleasure without incurring any morning-after-buyer’s-remorse and resultant scorn. And since the outings were infrequent enough, the restaurants retained their allure.
There was a glimmer of the old Gisella at one Italian bistro where she cased the joint suspiciously and said, “This looks expensive.”
“No, it’s not,” I shrugged and that was that. She took my word for it; we went back often and each time she marveled at the bargain.
Even as her aesthetic tastes became more difficult to satisfy, her sense of wonder for simple pleasures lingered: A ramble through Central Park the day after a snowstorm; in the summer, a trip to the zoo where she cocked her head at a Bird of Paradise perched on a nearby branch and said, as she had used to greet my brother or me after school, “Hello, darling.” The last complete phrase I heard her say, when she was in the hospice and I told her for the hundredth time that my son was getting married, was, “How wonderful!”
Whenever its onset, her illness took a long time to unfold.
Many years before her death, she would grow agitated when I helped her complete a sentence because she couldn’t find the right word.
“Don’t interrupt!” she’d lash out. Or, “No-o-o!” and then continue her train of thought, adopting the word I’d suggested.
This went on until a few years before her death when she could no longer disguise her deficiencies. But even then, on good days, her underlying condition became history and whoever she was talking to was the idiot.
In a way, she was right. Incapacitated though she was, some of the people who took charge of her were wrong-headed in their approach. It was infuriating to her to recognize this while remaining helpless to combat it because she lacked the words.
Thus the geriatric care manager who, in my mother’s view, barged into her kitchen uninvited and talked about her airily in the third person to her aide, (“She can go out after lunch,”) instigated a scene that surely made that care manager feel she’d earned her $175 per hour.
Once the illness took hold, however, my mother’s deterioration proceeded with the inexorability of a Greek tragedy. I responded by putting off as long as possible the inevitable move to a home.
For she had always loathed the thought of ending up in one. She had never worried about it, though, since she planned to kill herself before the prospect became an issue. Like any good student of suicide, she had a way: She would take plane trips to Spain (at the time, the site of an above average number of plane accidents) until one of them crashed. When I pointed out that she could thus outlive her savings, she revised the M.O. but not the goal. She was thrilled when she took a cruise on the Queen Elizabeth II and the ship ran aground. What an elegant way to go! But then the lifeboat was lowered, she instantly redirected her enthusiasm and leapt in, going on to delight in her grandchildren and throw countless more dinner parties.
Anyone who knew her understood that moving her from her apartment would precipitate the transition from gradual to sudden decline, ushering in the denouement to her death. So when she became more absent-minded than usual, I simply had the gas turned off, kept the fridge stocked with dishes from Citarella that had thus far avoided the blacklist and set up an account at the corner coffee shop so she could have her favorite broccoli cheese soup even when she forgot to pay.
Some involved in her care, however, thought the move to a residence had been put off long enough. (“She should be in a home,” muttered her G.P., sotto voce. “That would kill her faster,” I muttered back. He nodded with a sigh. “Well, then,” he resumed his full voice for my mother’s benefit, “you can be tottering along now; see you in two weeks.”)
Of course, the antsiest faction to get her out was the co-op board of her building, who instructed the staff to call 911 whenever she seemed “upset.”
Thus the local police became regular visitors.
The first time they took her to the hospital, I arrived to find her sitting on her bed, rolling her eyes at all the fuss. The doctor on call agreed with her assessment of the situation and released her the same day.
Then she took up what is known as “sundowning.”
“This apartment is so gloomy,” she would complain at dusk, before going downstairs to talk to whoever was hanging out in the lobby.
But when the encroaching dark seemed to grow still more ominous, she ran down the hall, screaming.
If her aide, Elizabeta, (some names and identifying details have been changed) was there, she’d run after her but as often as not, the presence of the aide was the horror from which my mother ran. At a deep level, she retained her Sartrian conviction, often voiced when her mind had been intact: Hell is other people.
“Your mother’s been having night episodes, as I’m sure you know,” a sympathetic British woman said when we met outside the elevator and at the sight of the woman’s two wide-eyed children, my mother became her old fun-loving self. “Whenever I hear her, I let the children out; seeing them calms her down.”
The children, one of whom was less than two, seemed to understand their role and take it seriously.
What was it about the dark? Did it presage that final, all-encompassing night? For my mother’s screams were those not only of protest but also of terror; the final “No-o-o!” of Don Giovanni as he descends into Hell.
The second time she was hauled off to the hospital, she resisted the aides who led her from the ambulance to an examining room. She was injected with a narcotic that knocked her out for hours.
This was in the Emergency Room where, five years earlier, the 99-year-old mother of a friend, having fallen, was catheterized, although she had not broken any bones and was not incontinent. The procedure was performed by six people, none of whom was a nurse, much less a doctor. In the process, they tore the woman’s bladder.
From the Emergency Room, she was sent to the ward where my mother had now been admitted. There, while in the hands of residents and interns, though no attending physicians, she was scheduled for thoracic surgery without the consent of my friend, who was her mother’s Health Care proxy; this, on the pretext of an unexplained cough. My friend put the kibosh on the surgery which she learned of only because she happened to be present when her mother was about to be wheeled away to the Operating Room at 8:30 P.M.
A month after admission to the hospital, having bled continuously from the catheter which the hospital had insisted on keeping inserted, my friend’s mother died.
The story of this institution, into whose hands my mother had now been delivered, kept me hyper-alert.
Mum remained in the hospital over the holidays, uncatheterized, as per instructions which were repeated until they appeared on the computer screens of all relevant personnel, but heavily sedated while her doctors titrated her medications.
Meanwhile, she was not given food orally on the grounds that she wasn’t hungry, a mantra which would be repeated at every institution where she subsequently sojourned. However, she ate most of the croissant as well as decaffeinated coffee and milk brought by me or Elizabeta.
It was later explained that the actual reason she was denied food was the fear that because of her sluggish state, she might choke; a standard procedure which makes sense. However, it set in motion a vicious cycle in which she became too weak to eat as a result of which she became even weaker.
On Christmas morning, the whiteboard next to her bed read:
Attending: Merry Christmas!
I added below, “You mean, ‘Nobody.'”
After ten days or so, the hospital, having somehow consulted with the co-op board (or vice versa?) said she could go home so long as we hired a geriatric care manager to supervise her care. As a matter of fact, they worked with one who was available for an interview the following day.
The woman, a polished rep with a Southern lilt, explained that her agency, which I will call Happy Days (the other names I concocted in irony all turned out to be real geriatric agencies somewhere or other,) would send someone over to assess the apartment, then send a nurse who would be in charge of my mother’s medication. This involved putting her pills into a box that had a separate compartment for each day so as to be able to keep track of which medications had already been taken. An aide from the agency would do the hands-on care. That aide could not be Elizabeta, with whom my mother got along (a rare enough phenomenon) because Elizabeta had come from a different agency.
I told Happy Days that my mother did not take kindly to strangers. If there was not at least a transition period between Elizabeta and the new aide, we’d all be back in the hospital and one step closer to my mother’s having to go to a home, which would not be in the agency’s interest, let alone my mother’s.
My mother was released from the hospital; the agency assessed the apartment and sent the nurse; then a rep arrived with the aide.
My mother had had it with strangers; she didn’t let them in and as was her wont, she accomplished her goal with all due drama.
The agency did what their protocol required: They called 911. And back we all were at square one or rather worse: We were one step closer to having to place Mum in a senior residence.
I went to the hospital where Mum was in the waiting room, hiding beneath the brim of her cap with a mischievous grin as though to say: “I was really bad but boy, was it fun.”
Next to her sat an agency rep, one whose services cost $180 per hour rather than the aide whose fee was an order of magnitude less.
Mum was admitted while the doctors, in consultation with me and Anthony, worked out a Plan B.
When I got to the hospital the next morning, Mum was sitting up in bed, her breakfast pushed aside, untouched. She beckoned me to come closer, gripped my arm, using it to hoist herself out of bed and started walking purposefully (if with the miniscule steps of a Chinese woman with bound feet) down the hall. She was blowing this joint and going home.
We proceeded in silence so as not to give away the plan, our only communication Mum’s firm tugs this way or that on my arm. Besides, she was occupied keeping a lookout for the exit. I had neither the heart nor the guts to argue with her. Instead, as we hustled past the nurses’ station, I said out of the corner of my mouth, “My mother’s trying to escape.”
A moment later, a voice came over the loudspeaker which, in the overall din, Mum didn’t notice: “Patient at large.” The staff watched our progress in silence until we reached an intersection. Mum looked down the endless linoleum hallway that stretched before us as in a Kubrick nightmare, turned around in confusion and shuffled back to her room; her failure, forgotten.
Happy Days retreated gracefully into history. Enter Geriatric Care Manager Number Two: Ms. Competent.
Because Happy Days had from the outset expressed doubts about their ability to handle the co-op board, they had, in fact, mentioned Ms. Competent early in their discussions with us. (Translate: They knew they were out of their depth and would soon lose the case. Perhaps they specialized in elderly patients who behave themselves. But their awareness of their limitations and of the likelihood that this would be a brief encounter may shed some light on their frenzied activity as soon as we signed the contract; activity which would surface when their bill arrived several weeks later.)
In addition to an impressive bravado with the co-op board, (and, lest someone accuse me of trying to hide something, Adult Protective Services who had been paying the occasional visit,) Ms. Competent’s great advantage over her predecessors was that she understood the value of Elizabeta, mum’s aide. Ms. Competent, in other words, was willing to play ball.
She put Mum on the waiting list for a residence known for its flexibility. Meanwhile, since Elizabeta was not available 24/7, having an ongoing dental problem as well as a teenage daughter; and since Ms. Competent was unable to find a suitable person to fill in; and since Mum already “knew” her as she had been by to make her own assessment of the apartment and set up the all-important pill-box, it would be best if Ms. Competent herself did the supplementary care; this, at the rate of $175 p.h., the same rate to be applied also to her travel time.
The clock had been set for a move to a senior residence; it was only a matter of months at the outside. Since the idea of Ms. Competent’s acting as aide at approximately eight times the usual rate would, in happier times, have outraged my mother, (particularly as it had been Ms. Competent who had triggered my mother’s epic outburst with the talking-past-her incident,) I went looking for a residence with more immediate availability.
My students chastised me for not taking care of my mother myself. In their cultures, the elderly are looked after, by all accounts without resentment, sometimes even by non-blood relatives. One student, from Tajikistan, had a friend who’d taken care of her husband’s grandmother for fifteen years until she (the grandmother) died at the age of 112. And in Tajikistan, “taking care of” is no simple matter, even if the oldster is able to manage her own “toileting;” in that case, it involved hauling in wood for the fire and water from the well.
In the eyes of my students, therefore, I was a sorry excuse for a daughter. I bit that bullet and found a senior residence that was nearby and boasted expertise in Alzheimer’s.
The close atmosphere, with cozy lamps that cast a sepia tinge over the furnishings while show tunes from the 40’s played in the background, (surely audible only to visitors,) – wasn’t my mother’s style but would, if she remained at all sensitive to her surroundings, bemuse her. The place evoked the gentility of the deep South, as in the final act of Streetcar, when Blanche gets carted off to the loony bin. But, lifting my hopes, a large calendar on the wall was scribbled over in magic marker with the month’s activities: Movies, Ballroom Dance, Art Class and so on.
If Mum overcame her prejudices, (most likely through forgetfulness,) she could end up getting a kick out of this place. It was, after all, not unlike a cruise, but for the condition of her fellow passengers which she might be too out of it herself to notice.
I packed her a couple of suitcases: Night clothes, comfortable track suits and a few elegant blouses in the hope – pathetic, as it turned out – that they’d earn her some respect.
On the morning of the move, Anthony and Elizabeta took Mum out for breakfast before strolling down the street where they “happened” to run into the residence director who, as had been arranged, was standing at the entrance. She invited them in for tea. Charming conversation ensued; Mum must have been tickled.
Then it was time to leave.
Or so Mum thought.
When she realized the truth of the situation, Anthony said, “She tried to bite me,” only calming down when a nurse (in my imagination, the six foot tall one with the androgynous name) wrestled her into submission and injected her with a sedative.
Ms. Competent had wisely opted out of taking part in this scene. But, she had said, “I’ll come by when it’s over to introduce myself and make sure everything went smoothly.”
In other words, Anthony and Elizabeta would do the heavy lifting after which Ms. Competent would use the occasion to network with the residence director.
However, Anthony did not object. Indeed, he was relieved by the participation of Ms. Competent; when it came to people in charge, I, like my mother, had not been known, recently, for playing well with others.
The next day, I visited around lunch time. The floor was dark; the curtains drawn.
Most of the residents were women. But there was one squat man who waddled over to Mum and felt her up. She waved him away, not interested but at the same time, sympathetic to his desire. Unfazed, he moved on to a Frenchwoman who, with the same degree of absence as Mum, permitted his caresses as she talked a stream of surrealistic fragments to no one in particular.
“What’s today’s activity?” I asked the attending aide.
She stared back blankly. A few residents were sitting in front of the t.v., intermittently glancing at it before returning to their thoughts or absence thereof. One snored on the couch. Another walked around, sat down for a while, got up and went back to her room while a third came out of her room, walked around, sat down for a while… This seemed to be how they spent most of the day, like zoo animals who’ve become habituated to captivity.
At two p.m., an activity director came by to round up participants for Ballroom dancing.
“Do you want to come dancing, Gisella?” she asked Mum.
“What? No!” said Mum, not understanding the question and recoiling in fear.
“All right,” responded the woman pleasantly, before returning to the elevator with the sole resident who’d expressed interest. She already had enough takers from the early-stage Alzheimer’s floors.
“It’s dancing, Mum!” I protested.
But all Mum knew was, I was there and she didn’t want the visit to end. I made a mental note not to come at activity time.
During our initial interview, the director had said that there were regular trips outside but somehow, once Mum was enrolled, the weather was never quite right.
I hired an aide to take her across the street several times a week for decaffeinated coffee and a sandwich (she wasn’t eating much here, either) and kept her on the waiting list for the residence recommended by Ms. Competent.
It was when a bed became available there that we learned that what we had taken to be a routine deposit at Mum’s current residence was, in fact, a “community contribution” and therefore had to be forfeited.
Apparently, this graciously furnished human warehouse had anticipated family reactions to the real, day to day routine and devised a novel way to keep residents from jumping ship.
No matter – she was outta there.
The next home was cheerier – the dining-room, awash in sunlight – and quirky; the Montessori of senior residences. When Mum acted up, the nurse took her into her office where she stayed for hours, talking while the nurse took care of paperwork.
Also, the staff made an effort to include the less competent clients, of whom Mum was one. She attended a sing-along where most members were, in fact, chiming in. But either Mum couldn’t hear or she was too drugged to participate; she slept through the entire session, like the kid in school who ends up dropping out.
She was not the only lost soul in that residence. Another woman, a former public school music teacher who could no longer speak, was crying every time I saw her.
Meanwhile, Sunshine sent their bill: $1720.
“Care management; Visit; Care management; Coordination of Services; Communication with Client/Family or Other Social Support: 2.00 Hours; $360.” ” Care Management; Coordination by X.Y. [someone I never met in person:] 3.00 Hours; $540.”
By “coordination of services,” they meant agency employees who had spent whatever percentage it was of the five hours on that portion of the bill conferring with each other, then calling me to find out what each other had said.
“Care Management; Visit; Supported caregiver: 4.00 Hours; $720.”
This last item referred to the fact that the aide had been escorted to my mother’s apartment by the agency rep.
I sent $442, for two hours of “coordinating/management/visiting” services and a full day’s pay for the aide who had been hired and, through no fault of her own, not allowed to carry out her duties.
Needless to say, the bill was resent. I forwarded my previous email which read in part: “I am not sure why the caregiver needed support. She was capable of calling 911 herself. That ability is surely included in the job description. In any case, if the caregiver is the one being supported, she should be the one paying [the agency rep.]” The dunning letters ceased.
Mum’s new residence called. She was “not responding to medication,” residence-ese for “screaming her lungs out and driving us all crazy.” The doctor had tinkered with her meds to no avail; it was time for her to be hospitalized once again.
She was there for several weeks before the doctors determined that they had no medical cocktail adequate to control her enough to meet the standard of a senior residence; she must go to a fully staffed nursing home.
Only one of the homes they recommended in New York City was both able and willing to take her.
Anthony and I visited.
“The sheets are changed every day,” said the guide, “and if the resident has a bowel movement in bed after that, we change them again.”
“That’s good to hear,” said Anthony. “Once.”
“And this is the Activity room,” said the guide.
The residents were sitting in two rows in front of the television where a frenetic game show erupted in applause. There was no response from this audience; everyone was either asleep or unable to hold his or her head up to look. The back row wouldn’t have been able to see anything anyway. As usual in these homes, only the aide was watching and that, only desultorily.
The advantage of this home was that it was near enough for me to visit frequently. However, it was more important for Mum to be someplace where the staff would pay more attention to her.
She went to a home in New Jersey that had an excellent reputation for working with dementia patients.
It was two and a half hours away by public transportation, too far for Elizabeta. But there was one aide there who was able to induce Mum to eat. Probably she smiled or said a few phrases that allowed Mum to feel she was engaged with another human being.
It wasn’t long, however, before Mum made trouble here too. Once again, she needed to “have her meds revised,” code for “sent to the psychiatric ward.”
Here, the Activity Room was aptly named: It was a hive of activities. The t.v. was on, of course, but at the same time, directly in front of it, was a music class. An aide led the patients in a song, regularly sounding a triangle by way of accompaniment.
Anyone actually watching t.v. would not be able to hear while anyone paying attention to the music class would be distracted by the t.v. The word “bedlam” came to mind, (deriving from “Bethlehem,” this was, in fact, originally the name of a lunatic asylum.) Any resident who wasn’t crazy already soon would be.
Out in the hall, other patients lay on cots; some, groaning, as in a scene from Dante’s Inferno. Soaring above the general din, at regular intervals came a cry from a patient at the far end: “Help me!”
The staff walked past her, oblivious as figures in a dream where you’re screaming and no one hears.
Another patient took up the lament, like a bird recognizing the call of her own species.
“Help me!” cried the first patient.
“Help me!” echoed her soul-mate.
Since Mum was dozing, I went over to the first crier.
“What do you need?”
“They haven’t got, well, you know…,” she said, with a covert look as though I was in on whatever she was talking about. “It was… the other one… didn’t go there.”
I nodded knowingly until the woman had had her say. And the “Help me’s” went quiet, for the moment, from her end of the hall.
But “Help me!” Number 2 was still going strong.
“What do you need?”
“What time is it?”
“A quarter to three.”
“Afternoon or night?”
The woman lay back in despair. “I’m so tired. I want to go to bed.”
She was in bed but had, if not miles, then hours to go before she could get a night’s sleep.
Mum was on one of these cots too. A versatile contraption, it can function as a wheelchair when necessary. An aide unlocked the device so after rousing Mum, I took her for a walk through the halls where we toured the impressionistic reproductions on the wall. More importantly, we talked to anyone who was up for a chat. Mum was starving for a social life and I introduced her around in the hope that these people would greet her also when I wasn’t there.
In between visits, she got Physical Therapy as well as Occupational Therapy for her wrist which was curling in with the atrophy of her muscles. I’d signed her on for whatever the nursing home offered on the theory that if nothing else, she’d benefit from the contact with people. Even the visits from the pastor were welcome although in her coherent days, she would have been appalled.
“What’s her religious affiliation?” he asked.
“None.” Then, lest that be misconstrued, “N-O-N-E.”
The social worker had said that if the nursing home learned that my mother was born Catholic, she might end up with some heavy duty religious talk as well as last rites.
If she understood any of it, this would be sure to set off a fit of despair.
One day, I arrived to find Mum in her room, rocking back and forth. A string about six inches long was clipped to the shoulder of her gown at one end; at the other, to the back of her chair. She had been trying to “escape” again; this time, simply to go to the bathroom. But that was not allowed because it was dangerous for her to get around unassisted and there was no one available to escort her. Therefore, like a child in a classroom, she had to stay seated.
If I were a twenty-something, I would have had one of those smartphones to record the moment. The video would not have revealed Mum’s face; this was not her finest moment and in her finest moment, she would have detested the record. But posted on Youtube, it might have had some effect.
However, I am not a twenty-something with a smartphone.
I summoned the nurse.
“You wouldn’t do this to a dog.”
“I’ll call the supervisor,” said the nurse, smelling trouble, and left the room ASAP.
“She was trying to get out of the chair,” explained the supervisor with faux patience, as though the act were equivalent to attempted jailbreak. Did she think that settled the matter? (“Oh well then, of course you must tie her down. For $560 per day, you couldn’t possibly be expected to help her walk around the room a few times.”)
“You can’t restrain her all day,” I objected.
“It’s not a restraint!” responded the supervisor with unaccustomed vigor. “We don’t restrain patients. It’s not attached to her; it’s attached to her nightdress; she can get out if she wants to.”
“No, she can’t; she’s not strong enough. She’s been trying for the last half hour. And anyway, if she could get out, then it wouldn’t be effective, would it?”
However, with the word “restraint,” I had unwittingly hit a nerve. It is against the law, I subsequently learned, to restrain patients. The following week, the tether was longer and Mum, unaware of it and therefore, at peace.
In the interim, her doctor had been informed of The Situation (Read: Irate Family Member) and called to discuss it (Read: Placate Said Family Member.)
“The whole time I was there, she was trying to get out,” I said.
Agreeably enough he replied, “Yes, I know. I’m trying to find a medication to stop her moving so much.”
Why don’t you just kill her? That’ll stop her moving so much. Her movement, however potentially dangerous, is a sign of the life-force.
She was also continuing to lose weight. A lean 119 pounds for most of her life, she was down to 93.
“Her appetite is poor,” said the nurse, evoking a line from a Ring Lardner story: “‘Shut up,’ he explained.”
My mother’s second husband, the screenwriter Albert Hackett, (with his first wife, Frances Goodrich, he co-wrote It’s a Wonderful Life and The Diary of Anne Frank, among other films,) died at ninety-five after a “battle with” Alzheimer’s and anyone else who was around at the time. For the last five days of his life, he closed up shop which is to say, he refused to eat.
In her “right mind,” my mother had admired the expeditiousness of this exit and said that when her time came, she would follow suit.
A casual observer might assume that her time had indeed come. Mum, who was raising Cain whenever the staff bathed or even moved her, also shook her head when they offered her food, refusing the white roll, the gray beef, the boiled spinach. (I didn’t understand how anyone could stomach that turgid green mass but the nurse, a trooper for the institution, stalwartly asserted, “I don’t see what’s wrong with it.”) However, she gobbled up the papaya or mango I brought and smiled enchantingly at anyone who behaved not as though they were clinicians doing their job but friends who were happy to see her. Although, God knows, she could be implacable, there were times when she was not rejecting food so much as authority or simply being treated as a job rather than as a human being. (The nurses and aides are not to blame for this; they are victims too, overworked and underpaid; but the reality remains.)
Each of her residences had asked for any information the family would like to add about the patient. Each time, I’d provided a list of her preferred foods, especially the fresh fruit she craved.
“We can’t keep food like that on a large scale,” said the woman in charge of meals. “But,” she smiled as though the bright idea had just struck her, “you’re welcome to bring it yourself if you wish.”
I brought those foods but not a week’s worth of groceries. Mum’s weight continued to drop – to 88.
I fed her Ensure and applesauce; she wanted more.
“Sometimes patients don’t like to be fed by a stranger,” explained the nurse. “They’ll only eat if a family member gives it to them. You’re welcome to come at mealtimes.”
“Elizabeta used to feed her; she was no more family than you are. And there was an aide in [the first branch of the nursing home] who also got her to eat.” The implication being, “She’ll eat if you keep trying.”
The nurse busied herself with another patient.
This ward had an Activity room too but this was an Activity room with a difference; it was the end of the line. Even the t.v. didn’t pretend to keep patients entertained; it was set to screen saver – a palm tree bending slowly back and forth.
Probably this was to keep the more agitated patients from going berserk. The rest were so zoned out on whatever medication they were taking that they didn’t notice anyway. Or if they did, they soon gave up and retreated to sleep.
Despite the subdued atmosphere, one week, a fight broke out.
It started when a patient got out of her seat.
“Siddown,” snapped the aide.
“No,” retorted the patient.
“Siddown and shuddup!” snarled the aide, pushing the patient back towards her chair.
“No, you shut up!” returned the patient.
Now everyone joined in: “Yeah, you shut up!”
They were in their element, a dysfunctional family; the aide, wielding power only because she was in better physical shape, for now, at least. The scene brought to mind an article which claimed that people who take care of Alzheimer’s patients are six times more likely to get the disease themselves.
Mum’s weight fell further – to 85 pounds. “Appetite: Poor,” noted the nurse on her chart before wheeling the food away.
Again, I asked for Ensure and after a few protests from Mum (weaker now, like a mewling cat) she ate half the container.
Again, I reported that with respect to feeding my mother, the staff needed to keep trying.
“As they reach end stage, they lose the ability to swallow,” explained the nurse.
Mum had not lost the ability to swallow but the phrase “end stage” triggered the thought: She is now eligible for hospice.
We transferred her to her final stop: a hospice in New York.
Like its predecessors, this home was a place which Mum, in better days, would rather have died than end up in.
But as with its predecessors, now that she was there, she changed her mind. She still intermittently fought off the staff, refusing to eat, then wolfing down Ensure when Elizabeta or I offered it to her.
She was in hell. But she didn’t want to die: She wanted to go home. She was fighting for her independence.
Everyone does, observes a friend who used to be a Clinical Psychologist.
Only when she lost the ability to swallow did she clam up her mouth firmly and consistently, as she had always maintained she would.
Since a feeding tube was not an option and I didn’t want her to suffer hunger pangs, (despite the assurances of a nurse that endorphins make the whole experience more pleasant,) I instructed her doctor to up her morphine.
Three days later, at 5:30 a.m., the call came that she had died.
Jenna Orkin is the author of Writer Wannabe Seeks Brush With Death.